Introduction
Community-based participatory research (CBPR) and patient/community-engaged research (P/CEnR) projects have been established over the last two decades with integration of engagement principles [Reference Wallerstein, Duran, Oetzel and Minkler1,Reference Israel, Eugenia, Schulz and Parker2], resulting in a growing body of evidence of the impact of this approach on social and health improvement outcomes [Reference Drahota, Meza and Brikho3–Reference Ortiz, Nash and Shea5]. CBPR is a collaborative research approach that actively involves community members and stakeholders in all stages of the research process to ensure that findings are relevant, applicable, and beneficial to the community itself [Reference Wallerstein, Duran, Oetzel and Minkler1,Reference Belone, Lucero and Duran6]. Despite the integration of principles and recognition of positive outcomes, incorporation of promising or best collaborative practices remains fragmented and highly varied in research projects, with insufficient research support infrastructures and processes to help individual investigators and institutions create and sustain community–academic research partnerships [Reference Skinner, Williams and Richmond7–Reference Sprague Martinez, Howard and Schotland11]. The COVID pandemic re-ignited concern for inequities and racism, and with the murder of George Floyd, has strengthened the need to solidify investments in structural supports for community engagement [Reference Fleming, Stone and Creary12–Reference Shelton and Brownson14].
A review of partnership engagement in Patient Centered Research Outcomes Research Institute (PCORI) funded projects highlights the importance of leveraging existing institutional infrastructures; and the importance of respecting and prioritizing the diversity of patient perspectives and values, especially from marginalized populations [Reference Lavallee15]. In a recent article by Carter-Edwards and colleagues, the authors note the lack of supportive institutional policies and procedures as well as fiscal and administrative processes that can foster P/CEnR [Reference Carter-Edwards, Grewe and Fair8]. This is supported by recent publications that stress the need for greater training and development of tools for patient and community engagement in research [Reference Concannon, Fuster and Saunders16–Reference Kirwan, de Wit and Frank18]. For national success, it is imperative for institutions to understand and enhance institutional internal capacity to support P/CEnR, internal and external structures needed, and institutional commitment to community and patient-centered health equity research with marginalized diverse populations to ensure empowerment through joint patient and community decision-making and shared governance in research.
To tackle these issues, the University of New Mexico Center for Participatory Research (UNM-CPR), with national partners, received a PCORI engagement award (2021–2023) which was built on three funding cycles from NIH Engage for Equity (E2) since 2006, from the UNM-CPR with national partners, producing a conceptual model for CBPR [Reference Belone, Lucero and Duran6], and identifying partner best practices such as trust-building [Reference Lucero, Boursaw and Eder19], culture-centeredness [Reference Wallerstein, Oetzel and Duran20], power-sharing [Reference Wallerstein, Muhammad and Sanchez-Youngman21], formal agreements and other structures of co-governance [Reference Sanchez-Youngman, Boursaw and Oetzel22], and collective empowerment [Reference Wallerstein, Oetzel and Sanchez-Youngman23], shown to contribute to outcomes Reference Duran, Oetzel and Magarati24,Reference Oetzel, Boursaw and Magarati25].[Most recently, we conducted a randomized control trial of the E2 toolkit that strengthened the evidence for workshops versus website resources (available at: http://engageforequity.org) for strengthening partnership practices and outcomes [Reference Parker, Wallerstein and Duran26].
While E2 has proven successful at supporting research projects at the partnership and individual level, E2 PLUS [Reference Sanchez-Youngman, Adsul and Gonzales27], described in this manuscript and funded by PCORI, sought to take the next step of scaling up the E2 for institutional transformation [Reference Sanchez-Youngman, Adsul and Gonzales27]. The UNM-CPR invited partners from three institutions for this project: Morehouse School of Medicine, Fred Hutchinson/University of Washington/Seattle’s Children’s Cancer Consortium, and Stanford School of Medicine and Cancer Institute. While details of the intervention are provided elsewhere [Reference Sanchez-Youngman, Adsul and Gonzales27,Reference Wallerstein, Sanchez-Youngman and Dickson28], in brief, the E2 PLUS intervention consisted of establishing champion teams of investigators, staff, patient, and community advocates; collection and co-interpretation of quantitative and qualitative data about the institutional context of equity and engagement from top leaders, investigators, and patients and community through workshops; and bidirectional (i.e., between the UNM team and the champion team) coaching for the use of data and learnings to advocate for policy and practice changes to the top leaders at each participating institution. This paper provides a deeper understanding of institutional contexts, aggregated across the three participating institutions, as assessed by qualitative and quantitative methods from the perspectives of institutional leaders, investigators and community/patient members engaged within each institution.
Materials and methods
Each site participated in the quantitative and qualitative institutional assessments; and for this analysis, we triangulated data[Reference Creswell and Creswell29] to generate a list of factors for within and across institutions that influenced the support toward and impact of P/CEnR. The study was reviewed and approved by University of New Mexico Health Sciences Center IRB (HRRC: # 21–320).
For the qualitative assessments, we conducted internet-based focus groups with 6–8 individuals at each site with two groups – one group consisting of researchers and research staff and the other group of patients, patient advisory committee members, community members, and community/patient advocates – for reflection on perceived issues regarding institutional support for P/CEnR and available institutional capacities. Since the groups were small and individuals would be easily identified, we did not collect any demographic information. A total of six focus groups (n = 22 patient or community members and n = 9 researchers and research staff) were conducted from the Fall 2021 to Summer of 2022. We also conducted three to four interviews of top leaders (e.g., Principal Investigators or Directors of Clinical Translational Science Awards Centers, Cancer Centers, or Prevention Research Centers, etc.) at each institution (n = 11) to assess their perspectives and vision for P/CenR promoting policies, practices, and resources and how these fit with their vision for equity. All group discussions were recorded and transcribed; transcripts were used for the analyses.
For the quantitative assessments, concurrent to the focus groups and interviews, champion teams recruited up to 35 individuals per site (total n = 99) (including other researchers/staff; outreach staff across the institutions; patients and community/patient advisory members; and selected leaders, such as training or IRB directors, and research or finance directors). Survey measures focused on institutional commitment to health equity, internal capacities, policies and processes, and external institutional influences related to P/CEnR, and is described elsewhere[Reference Dickson, Kuhlemeir and Sanchez-Youngman30].
Theoretical frameworks informing the analyses
The analytical strategy was guided by a comprehensive theoretical review [Reference Wallerstein, Duran, Oetzel and Minkler1,Reference Aguilar-Gaxiola, Ahmed and Anise31,32]. First, we were guided by our own validated CBPR conceptual model that outlines the “context” under which community–academic partnerships operate [Reference Wallerstein, Duran, Oetzel and Minkler1,Reference Belone, Lucero and Duran6]. This construct is often explored qualitatively, through the use of the collaboratively constructed “river of life” tool that helped workshop participants document their history of engagement across each institution, including facilitators and barriers they have faced [Reference Parker, Wallerstein and Duran26,Reference Sanchez-Youngman33]. A subconstruct under the context domain specifies the capacity of the academic partners or the institution, which was further validated in a study with community partnerships [Reference Belone, Lucero and Duran6]. A goal of the present study was to explore and further develop our understanding of institutional context as it influences community-engaged research. Second, we also reviewed the newly developed Assessing Community Engagement (ACE) Conceptual Model [Reference Aguilar-Gaxiola, Ahmed and Anise31], which reflects the major indicators leading to the fundamental goal of health equity and systems transformation while centering on community engagement. Although academic health institutions were not an explicit focus of this model, the domain of strengthened partnerships and alliances details key indicators such as sustained relationships, mutual value, trust, and structured supports for community engagement, which were key to consider. Another framework that influenced our analysis was the Engagement in Research: Theory of Action, by the PCORI and based on a landscape assessment conducted by RAND [34]. Similar to the ACE model, the PCORI Engagement in Research does not focus on academic health institutions; however, it does bring to focus the concept of context in which the engagement occurs, including the research setting and types of projects. Finally, we also informed our analysis by a review of the literature that highlighted key barriers at the institutional level[Reference Carter-Edwards, Grewe and Fair8] and from the perspectives of patients involved in research [Reference Kirwan, de Wit and Frank18]. It is important to note that none of these frameworks were a clear fit for the proposed research question: What are important contextual influences in an academic health institutions that can support or hinder patient/community-engaged research? The domains and subconstructs within these frameworks that were often titled “context” or “partnerships,” however, critically informed the thematic analyses presented in the paper (see Figure 1 for specific domains and constructs).
Theoretical frameworks, domains, and constructs, informing the analytical strategy.
Analyses
We used a mixed-methods triangulation approach[Reference Creswell and Creswell29] to integrate findings from top leader interviews (n = 11) and discussions (n = 6 focus groups) with investigators and community/patient partners across the three academic health institutions, with surveys of respondents (n = 99) from all participating groups. First, we conducted analyses on the transcripts using an inductive and deductive process, informed by the theoretical review presented in Figure 1. All analyses were conducted in Atlas ti. Once the themes were outlined and described, we reviewed the quantitative reports to identify data points that either supported or opposed the qualitative findings. For themes that warranted comparisons of perspectives of community and academic partners separately, chi-square tests were performed on simplified versions of the variables of interest to assess whether differences between community and academic partners were significant. Simplified versions of the items had three categories (e.g., “Agree,” “Neither or Agree nor Disagree,” and “Disagree”) – collapsing variations in strength of agreement or disagreement and excluding “Don’t know” responses. Post hoc tests, using the Bonferroni method, were conducted to confirm significant differences between academic and community partners in the category reported. All quantitative analyses were conducted in R version 4.3.2. Additional details around the quantitative analyses are presented elsewhere [Reference Dickson, Kuhlemeir and Sanchez-Youngman30]. In this manuscript, we focus only on results that informed the mixed-methods analyses, presented in a joint display in the results. Within the project, these data informed the ongoing reflection and strategic planning for the champion teams, through monthly meetings with UNM to reformulate goals, strategies, and actions as they relate to the CBPR model [Reference Sanchez-Youngman, Jaquez and Adsul35].
Results
A total of 22 community members and patients and nine investigators or researchers participated in the focus group discussions, across the three institutions. We interviewed 11 institutional leaders (e.g., President and Director of an NCI-designated comprehensive cancer center, Chief Executive Officer of an academic health system, Directors of Clinical Translational Science Centers among others). Below, we present the key emergent themes and supporting quotes from the analyses in Tables 1, 2, and 3.
Representative quotes for themes one and two
Representative quotes for themes three and four
Theme 1: Global pandemic and national events highlighting social injustices sparked a focus on health equity in academic health institutions
Many participants in the interviews and discussions highlighted the external pressures caused by the pandemic and the national events, suggesting that “Without a doubt everything that’s been going on in our country and around the globe, those events have brought people together. Sometimes feeling very vulnerable and threatened in a fashion where people come together to support one another, sometimes in a bit of anger or in a mode of ‘Oh this is a problem that we want to do our best to address.’” The leadership also noted that health and healthcare have been impacted by these events, with academic health institutions in a unique position to address these challenges, as noted by one leader in Q1. Leaders from all three institutions participating in this study highlighted the impact of the global pandemic and national injustices toward an important focus on health equity for academic health institutions. One leader noted that these events allowed for more strategic focus across the institution (Q2). Others mentioned leveraging these external events to undertake strategic prioritization within the academic health institutions, where one leader mentioned the pledge undertaken by the academic institution (Q3). Another leader (Inst 3) mentioned using the current events to, “do things differently, shift our model of operation in a way that allows us to do things differently and still have performance mechanisms in place.”
Quantitative data showed community and academic partners largely agreed, with most (65.8% of academic partners and 82.5% of community partners) respondents reporting that institutional statements on its mission, vision, and values demonstrated a commitment to health equity. However, among those community and academic partners that did believe that their institution held a commitment to promoting health equity, there was disagreement about the extent to which the institution was taking action to demonstrate that commitment. Among community partners, 79% believed that the institution was taking action toward health equity, but only 52% of academic partners agreed (Χ[2] = 6.466, p < 0.05).
Despite these strategic shifts, many leaders also mentioned that a focus on health disparities was not new for their work and for research, highlighting strategies such as telehealth were being incorporated prior to the pandemic (Q4). Many recognized, however, that the recent events had led to a broader understanding (Q5). Similarly, another institution participating in the study, suggested:
“We have been in the health disparity space since our existence, it’s part of our DNA. We believe that to some extent COVID-19 has allowed others to see what we have known for the last 40+ years. We knew very well COVID-19 would exacerbate what we know as health disparities, so we worked very quickly to mitigate those. Many people inside these communities have known it for years; now everyone is beginning to recognize it” - Inst 3, Leader
On the other hand, researchers highlighted a disconnect between leaders’ discussions of health equity and their observations of the institution. Survey data showed that only 36% of academics agreed that their institution was recognized for health equity research. Investigators also noted the recent emphasis on health equity needs to now be sustained through ensuring supportive structures are put in place for investigators and community members engaged in research. In one institution included in our study, a leader noted the importance of such a sustained focus (Q6). Investigators from other institutions included in this study also noted that the recent focus on health equity has created an important opportunity for ensuring institutional support, as noted by this investigator (Q7). Another investigator, also recognizing the recent shift in priorities especially in medicine, recognized that more conversations were considering community engagement in research (Q8).
Theme 2: Including a focus on health equity did not translate to support for community-engaged research nor align with institutional reputation
Leaders across the participating health institutions mentioned several ongoing activities toward the goal of health equity. For example, a leader noted the overlaps with Diversity, Equity and Inclusion (DEI) efforts (Q9). Some mentioned that community-engaged approaches were just words that investigators used to recruit diverse populations (Q10). Another leader noted that,
“we’ve had perhaps a siloed understanding of what community engagement truly means. I think we need to make sure we have engaged and defined appropriately exactly the types of clinical guidance and partnership we need in so many other different domains.” – Inst 2, Leader
This recognition for sustained institutional partnerships also highlighted the need to operationalize and define what institutions meant, when they referred to the community. For example, leaders highlighted the multiple layers of community-engaged partners (Q11) and the need to differentiate between tokenism and authentic community engagement (Q12). Although it seemed that little effort was being placed on authentic community engagement, 68% of community members believe that the researchers they work with are comfortable developing an action plan to confront barriers to health equity that impact community members and patients.
Community partners also cautioned against partnering if there was no clarity from the academic health institutions in the purpose and intent of partnership, as described by a community member below:
“I’ve said before, academic institutions and research institutions use the community to further their goals, and very rarely is the community using the institution to assist them in their goals and I really think it’s important for [name of the institution] or any other institution to make it very clear how it is that the community and the institution can be working together and to make it really clear that it does not always have to come from the institution and often times it is the community that holds the solution and may need just a little bit of guidance and help to get there.. we may need some help in doing that research, to have the data, to back what it is they’re trying to do, because we know, when it comes to funding and things like that, people want hard data. So, that is where I see a major gap.” – Inst 2, Community/Patient member
Institutional reputation as leaders in basic and clinical sciences was mentioned across some of the participating academic health institutions, which made it difficult to prioritize populations sciences and community-engaged research. Quantitative findings showed that only 41% of academic partners thought their institution was recognized for its reputation in community- and patient-engaged research. One leader echoed this sentiment,
“[University name] is the place when it comes to mind for most people when you hear [University name] is fundamental discovery, basic science, hardcore, Nobel prizes, bench science. You don’t think public health, epi, clinical research, that’s not what you think/” – Inst 2, leader
Reputations of institutions combined with the foci for academic health institutions further perpetuated silos in partnering for community engagement (Q13). Only a third (32.6%) of academic partners agreed that institutional leaders support training and development of community-engaged scholars. Such perspectives of engaging with academic health institutions that did not truly understand the community surrounding them were shared strongly by the community and patient members participating in the assessment (Q14) and questioned the idea of how academic health institutions defined community (Q15).
Theme 3: Institutional structures created power imbalances and community mistrust which were identified as key barriers to patient/community-engaged research
Many leaders and investigators from the participating sites mentioned critical barriers to supporting the ongoing community-engaged research, including a focus on research that does not directly address community priorities (Q16) or cannot be scaled in the community. Fewer than half of survey respondents (45%) agreed that institutional leaders support researchers to learn from community partners about the ways to address the environmental, social, and economic conditions that impact health. Community and patient members currently engaged in research projects mentioned that “providers and patients speak entirely different languages, and I observe it over and over…Providers have a very different agenda or a very different view of the world, and many patients, especially ones that are newly diagnosed, don’t understand the terminology and we don’t understand the treatments… it doesn’t matter which clinical group that you’re involved in, it seems like there’s just this incredible communication gap.” – Inst 1, Community/Patient member
While issues of trust were apparent from a historical perspective, some community and patient members also mentioned the power imbalances that arose in research projects (Q17). The power imbalances manifested in how investigators asked for community and patient input. Community members mentioned that interacting with patients and getting feedback on the patient experience was different from engaging patients in research. (Q18). Such engagement has to start at the design of the research project, and researchers should ensure that community/patient input is valued and incorporated throughout the research process (Q19).
Theme 4: Institutional resources and investments are necessary for recruitment and ongoing support of community-engaged researchers
Across the institutions participating in this study, leaders noted the challenge of recruiting and retaining community-engaged researchers within their institutions (Q20). Other institutions participating in the study mentioned strategic investments in a “recruitment specialist,” who would
“go out and recruit the kinds of community based participatory research faculty that are going to help, look across the country, who are the people driving these agendas. [University name] has very clunky recruitment processes…but if you are an underrepresented minority or doing really impactful work in health disparities you can get a search waiver. We are trying to fast track some of these kinds of recruits that we think could really help change the complexion at [University name]” – Inst 2, Leader
In addition to recruitment, retaining existing faculty and supporting them in their community partnership was also mentioned by several leaders as an important support. However, among all survey respondents, 40% agreed that their institutions strongly support training and development of community-engaged scholars and 36% of academic respondents thought that institutional leaders supported researchers and staff to learn from community partners. Many investigators mentioned needing to advocate for themselves as valued members of the institution (Q21). In other institutions, the focus was on supporting investigators in an attempt to avoid the isolation that community-engaged researchers often experience in large academic institutions (Q22).
When queried about the specific types of institutional support to build capacity for that could strengthen P/CEnR, leaders, investigators, and community members suggested several strategies. In some cases, institutional leaders noted the importance of introducing authentic community partnership processes as a part of the medical school curriculum (Q23). Other suggestions included, “trying to find funding sources to help build infrastructure,” “ensuring that there were senior faculty with paid time [providing mentorship for community engagement in research],” and “recruiting a scientific editor to lead this subunit so we can help our faculty write and publish more.” Investigators also mentioned having to advocate for institutional support including time to engage with communities and sustain partnerships, ensuring that enough resources were provided to both the communities and investigators to avoid burning out. Only 27% of survey respondents agreed that the institution minimized barriers to participation of community partners in research.
Ensuring that community partners were adequately compensated was noted by many investigators and leaders as a priority. However, in some cases, ensuring that there was sufficient funding or fiscal departments not working in a timely manner for the compensation to reach the community was noted as a barrier (Q24, Q 25). Only 19% of academic partners agreed that their institution had necessary staffing resources to support CEnR. Specifically, only 33.3% of respondents agreed that institution made timely payments to community partners for participation in research and 26.6% agreed that institution made timely payments to community subcontractors.
Theme 5. Despite challenges, participants were motivated to transform current paradigms of research and noted that accountability, communication, and training were key facilitators
Several leaders mentioned being motivated to incorporate health equity focus through community-engaged research, either due to the effects of the pandemic or because the institution wanted to establish themselves as a leader in this space (Q26). In some cases, leaders mentioned that the newer generation of students and post docs were demanding change to address community priorities, creating new pressures for the leadership (Q27). Community and patient members on the other hand thought that research that does not incorporate patient voice is “flawed,” as noted here by a participant:
“One of the issues is that when you are in research and you don’t have the patient’s voice - you have flawed research, because it’s from the perspective only from the researcher, and it’s not from the patient, which means that if you don’t have all the patient voices or the patients involved then you’re going to have the research being skewed one way. And so then I don’t think it’s effective research; any research project that doesn’t include community or patient is flawed.” – Inst 1, community/patient member
While noting that the academic health institutions supported broad research programs, “from ethics, humanities, population health measurements to health services research, outcomes research, to the most basic of sciences,” many participants mentioned that the programs were coming together by the importance of the healthcare equity focus in the past few years. Nonetheless, several leaders mentioned the need for a “more defined, systematic approach to the science of community engagement and the action and implementation of community engagement across every domain of our research enterprise.”
Many leaders and investigators brought up the key roles of institutional offices such as the Office of Community Outreach and Engagement that are typically established under varying names either in the Cancer Centers or the Clinical Translational Science Centers (Q28). Such offices that are typically supported by infrastructure grants could provide the resources for bringing community and patient partners to the table and supporting relationships, through a preexisting group of community-engaged investigators and need not be disease-specific. Investigators particularly thought these offices to be important (Q29), with community members noting the need to streamline the engagement with researchers (Q30).
Community partners also advocated for accountability from the academic partners, which was not limited only to the investigators engaging in community-based research but should be across the institution (Q 31). They challenged academic institutions to commit to the process, “by changing the makeup of the institution, stop inviting the same old people in. Invite some different people. Get comfortable with people who make you uncomfortable. That’s what shakes people up out of their status quo existence is when you get comfortable with being uncomfortable. And I don’t think that the institution as a whole is comfortable with that just yet, with different voices.” – Inst 2, Community/Patient member
Joint display of themes and key quantitative findings
A joint display of the themes and supporting or opposing data from the quantitative assessments in provided in Table 4.
Representative quotes for theme five
Joint display of qualitative themes and key quantitative findings
Discussion
This Engage for Equity (E2) PLUS mixed-methods study of contextual facilitators and barriers has validated our own understanding from our previous Engage for Equity (E2) research [Reference Sanchez-Youngman, Boursaw and Oetzel22], of the limitations of single investigator-led research to create sustainable P/CEnR infrastructures within academic health institutions. Our theoretical saturation with the 42 qualitative respondents and 99 survey respondents confirmed the importance of understanding the contextual factors that facilitate or are barriers to institutional transformation. This recognition is important for future practice and research as academic health institutions seek to create contextually based strategies for strengthening patient and community-engaged research infrastructures. Mixed-methods analyses uncovered contextual determinants that also mirror a growing literature articulating the administrative and financial challenges to developing effective policies and practices that demonstrate support for engaged research [Reference Carter-Edwards, Grewe and Fair8,Reference Sprague Martinez, Howard and Schotland11,Reference Hallmark, Bohn, Hallberg and Croisant36]. This E2PLUS study however added a theoretical framework-driven understanding of new dimensions that were revealed through multiple (i.e., leaders, researchers, and community members and patients) perspectives. For example, the role of external context, in particular the role of COVID in shaping a recommitment to health equity and racial justice, yet the challenge remained in translating this stated commitment to health equity. Although the external context catalyzed a focus on health equity, there are gaps in translating that momentum to P/CEnR. As supported in our previous research community/patient–academic partnerships are unsustainable if the academic health center does not provide support through policies, practices for both fiscal and administrative support toward engaged research [Reference Duran, Oetzel and Magarati24].
What was of particular interest was the divergence in the quantitative and qualitative findings among community/patient advocates and academic top leaders and investigators, with community members drawing from their historical observations of lack of accountability of the institution or of NIH to the community. Clearly articulated were imbalances in power for research decision-making, and a lack of resources for sustained patient/community involvement. This study also highlighted the nuances of engaging patients or caregivers with lived experiences of health conditions in research, who may have the goal for advocating for themselves or their patient partner, which need additional support and engagement [Reference Chudyk, Stoddard and Duhamel37,Reference Easley, Wassersug and Matthias38]. In some cases, community partners had favorable views of P/CenR, likely because their specific academic partners may have attempted to reduce the barriers they faced, highlighted by the high trust reported by community partners in their academic partners. Building on the lessons learned from this work, we hope to further highlight the different approaches that might be necessary to engage patients and community members.
Despite the barriers and some of the differences, there surfaced a theme of commitments to transform the research enterprise, with specific strategies of communication, support for investigators, community accountability, and need for more resources identified. An important finding was the role of institutional offices, such as Offices of Community Outreach and Engagements in Cancer Centers [Reference Paskett and Hiatt39], Community Engagement Cores in Clinical Translational Science Centers [Reference Eder, Evans and Funes40], Prevention Research Centers, and federally funded centers, with community partners seeing them as having more influence, than the investigators who had more insider knowledge and could articulate the need for greater resources and top leaders support. These offices were perceived to be strategically positioned to build support for community engagement by bringing together representative from these offices across the academic health institution since many of these offices existed within an institution. The challenge, however, remains in supporting the individuals (i.e., staff, researchers, and leadership) in these strategic offices through structural changes at the institutional level to avoid tokenism[Reference Hahn, Hoffmann, Felzien, LeMaster, Xu and Fagnan41] and ensure that research incorporates the voices of patients and community members [Reference Ramsden, Rabbitskin, Westfall, Felzien, Braden and Sand42]. These data and co-interpretation of these data provided opportunities for initial attempts at coordinating activities across the academic health institution. Future work may need a strong emphasis on ensuring consistent communications and coordination, and resources between these offices to ensure a united front for academic institutions engaging with community partners.
Strengths and limitations
Building on extensive experience in evaluating and supporting P/CenR, this study was one of the first attempts at exploring and understanding how to address the institutional support for community/patient engagement in research. As a starting point, this study mostly engaged investigators and community/patient members that were already participating in research studies. Future research should also examine these perspectives from individuals that may not be actively participating in engaged research and may or may not share similar perspectives. In analyzing the data, we recognized our limitation of not having a clear understanding of the context in which the community-based organizations operate, or the relational context between the community-based organizations and institutions, which may have an important influence on outcomes for P/CEnR. Future research may incorporate both institutional perspectives, from the academic health centers and community-based organizations. Finally, from a methodological perspective, we triangulated across methods (i.e., quantitative vs qualitative) and across the respondents and may not have adequately represented each perspective included in this study. This study was limited to three institutions that were willing and ready to partner on validating the Engage for Equity methods and metrics on an institutional level. Future work to explore institutional assessments must consider and address differences across respondents, methods, and institutions.
Conclusions
Requirements from National Institutes of Health, particularly National Clinical and Translational Science Institute and the National Cancer Institute, have incorporated an institutional focus on supporting and promoting community/patient–academic partnerships, through their community engagement offices and centers. Such requirements provide a critical opportunity to leverage institutional structures and processes to support community/patient-engaged research. Study findings provide an in-depth and theory-guided assessment of institutional context that can provide several strategies and mechanisms by which institutions could address the hurdles to promote P/CEnR, further highlighting the importance of engaging existing institutional representatives in the CBPR approach to design sustainable solutions. They highlight a novel focus on academic health institutions as important contextual influences and provide important targets for interventions to improving supportive policies and practices toward equity-based P/CEnR.
Acknowledgments
The authors wish to thank Morehouse School of Medicine, Stanford School of Medicine and Cancer Institute, and Fred Hutchinson/University of Washington/Seattle Children’s Cancer Consortium for their partnership. This research was funded by the Patient Centered Outcomes Research Institute Engagement (PCORI) Award, “Engage for Equity: Advancing Research Support for Institutional, Patient and Stakeholder Partnering.” PCORI Eugene Washington Engagement Award ##21068. The University of New Mexico research team is grateful for the partnership of community/patient advocate and academic members of champion teams and other diverse stakeholders from our partners within Morehouse School of Medicine, Stanford School of Medicine and Cancer Institute, and Fred Hutchinson/University of Washington Cancer Consortium. We have appreciated our long-term support from our national Think Tank of community and academic CBPR experts.
Author contributions
PA, SSY, ED, AK, MM, BJ, and NW conceptualized and designed the study and participated in the data acquisition, analysis, and the interpretation of the data. KJB, BH, JAM, LGR, AP, PRE, and TA participated in the data acquisition, analysis, and interpretation of the data. PA, AK, and NW drafted the paper, and SSY, ED, BJ, AK, MM, KJB, BH, JAM, LGR, AP, PRE, TA, PCR, and LCE provided a critical review for important intellectual content. All authors approved the version to be published and agree to be accountable for all aspects of the study.
Funding statement
The authors declare no competing interests. Engage for Equity PLUS (2021–2023) was funded by the PCORI Eugene Washington Engagement Award, #21068, with UNM Health Sciences Center IRB approval, HRPO # 21–230. We appreciate the use of the evidence-based workshops and tools developed during the previous Engage for Equity study funded by the National Institute of Nursing Research, R01 NR015241.
Competing interests
The authors declare no competing interests.
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